Nora 12

Hi everyone,

It has been awhile since we sent an update. We were trying to send whenever we got good news… but lately, we haven’t gotten any… Nora’s numbers have been sliding.

Her red, white and platelet blood cells are critically low. She needed a platelet transfusion last Thursday. That same day I kissed her and I poked her in the eye with my nose. The whites of her eye turned red and she had a bruise in the socket. Whenever something happens to her head, we have to go to the emergency room. So we spent Thursday night until 3AM in the pediatric emergency at Stony Brook. Luckily, she got platelets that day, otherwise it could’ve been much worse.

Nora’s neutrophils are also critically low. She is borderline neutropenic again. If they drop any lower she will not be able to go out in public. Her creatine, glucose and BUN (nitrate) levels have been very high so we are watching her kidneys and forcing water into her. She is always tired. She has so few red blood cells that it is like she has altitude sickness at sea-level. We were scheduled to go on her Make-A-Wish trip to DIsney in February, but we may have to cancel because she doesn’t have enough red blood cells to fly — the change in pressure could make her hemorrhage.

These past weeks have been a huge emotional blow. This morning Nora was crying because she doesn’t want to take her medicine anymore, she wants to play with her friends and she hates having to be careful. We are up to 4.5ml of cyclosporine a day. The side effects are making her gums incredibly swollen and she is growing hair everywhere. Her body is once again covered in bruises. I am so thankful she is not a self-conscious teenager right now!

We still have not found a bone marrow donor match. Shawn’s family is having a bone marrow and blood drive in Maine in December. We are hoping that since she has a whole lot of Getchell genes, and his family-line has been in the ‘State of Maine’ since it was part of the ‘Plymouth Company’, maybe we’ll find a match up there.

We continue to ask that you all pray for her healing with all your heart. With all your collective positive energy, we believe she will get better.

If you are able, please give to ‘Friends of Nora Getchell’ PO Box 212 Mastic Beach, NY 11951 so we can get more people swabbed. Pass this email onto friends so that they will pray for her too. This Thanksgiving, we will be giving thanks for all of you. We are so grateful.

Love,
Shawn, Maureen, Arik and Nora Getchell

“Whatever you ask for in prayer with faith, you will receive.” Matthew 21:22

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4 thoughts on “Nora 12

  1. Hi Nora
    Sorry to hear that you are not feeling well. I think about you & your family often and wish there was something I could do to help.
    Stay brave & strong.
    When you feel up to it we could paint together, maybe make some Christmas cards. Have Mom call me and we’ll set up a date.
    Bruce & Juliette say HI
    XoXo
    Lorraine

  2. Hi everyone,it`s nice to hear from you guys,so sorry that Nora isn`t feeling good & this wather is very depresing I wish I could do anything to make her feel better,you welcome to come over & we`ll have a playdate with Nora & Diana:)
    miss you all, hugs & kisses Zoryana , Daniel & Diana

  3. Hi,
    I don’t know you, but I’m an Aplastic Anemia survivor who heard about Nora because a blood drive was held for her in Brooklyn where I live. I just wanted to say that even though ATG and cyclosporine treatment is rough, things get better if the treatment works!! I was diagnosed with AA in 2005, and I now live a fairly normal life with few symptoms or problems. My AA morphed into PNH but it’s under control. I also want you to know that a bone marrow transplant may not be necessary if Nora’s ATG/cyclo goes well. Lastly, did you know that one of the country’s foremost experts in AA is right here in NYC, at NYU? Dr. David Araten. He saved my life.
    I wish you and Nora all the best and I’ll keep my fingers crossed that things go as well for her as they did for me. Sending hugs,

    Marlena C.
    Brooklyn

  4. Hi Nora and family,

    You don’t know me, but I heard about you through the aplastic anemia community on Facebook, and I’m thinking about you a LOT this morning. Individual circumstances are always different — and yet I know a lot about what you’re going through now. My daughter was seven when she was diagnosed with severe aplastic anemia — and it was such a scary time. That was six years ago. Oops — seven years ago. I lose track of time, because now my daughter is a teenager — she turned 14 just two weeks ago. And you know what? She’s cured and healthy, and I so much want that to happen for you. It was a long, hard road to our cure, and sometimes I don’t know how we all made it through. But we did. Hopes, prayers — all those positive thoughts, we’re sending your way. I think it’s great you have a blog; our CarePages community was very important to us through our ordeal. And if I can be any help, you can contact me through paulcmclean.com.

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